Focusing on disability, benefits, and sharing my experiences of COPD, heart failure/aortic valve calcification & stenosis, ME/CFS (27 years), and, latterly, bilateral lymphoedema and cellulitis (foul conditions that cause me more pain and misery than everything else combined), plus general disability and mobility issues and advice, in the hope they will help others, along with books, cooking, and anything else that piques my interest… Please note: This theme was selected for its overall clarity, but many items are greyed out until you hover the cursor over them including, annoyingly, the photo below.

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Chronicles of the Heart, Part 38 – Update…

Well, my cardiologist has now prescribed the missing beta-blocker – just a pity my GP surgery screwed up and put the scrips for that and Diltiazem in with those for patient collection, instead of the box for the pharmacy to deliver, or I would have had both days ago! You know, it would be nice if, just once, people who have my health, and quite possibly my life, in their hands, did their fucking job properly! It beggars belief that one person can be beset by so many incompetent people.

The drug is Nebivolol, and he told me that this was a new beta-blocker that was safe for those with asthma. Er, that would be, technically, a lie – or, being more charitable, bending the truth almost to breaking point.

Nebivolol, along with one or two other beta-blockers, is slightly less dangerous than others for patients with reversible airways disease (i.e. asthma). That does not translate as “safe”.

I do, at least, know the risk, and will be monitoring my Peak Flow and FEv1 very carefully.

And the dreadful Losartan is consigned to history, and my heart meds now look like this (and bear in mind Dr. Newall, who chose to ignore me for 4 months, could have done this):-

Furosemide (diuretic, Lasix in the US and others) – currently I’m having to take the maximum oral dose to get any effect at all, possibly because Losartan causes oedema; is that perverse or what?

Nebivolol – beta-blocker, not good with asthma.

Adizem XI – Diltiazem, a calcium channel blocker. I took Diltiazem for over 10 years, until my GP stopped it because he said it was dangerous in heart failure. And yes, I’ve done my research, and it can be dangerous. In addition, it’s recommended for patients for whom beta-blockers are contra-indicated (i.e., me), so why do I have both?

So OK, those to drugs are as likely to make me very sick as they are to improve my situation. However, as that situation means that I’ve been confined to one room for the past 18 months, I’ll take the risk. I’ll also introduce them one at a time, so I know what’s causing any problems that occur (though as I’ve said before, what reactions might take place within the chemical soup that’s already sloshing round my system it’s impossible to predict). Diltiazem is a known quantity, so I’ll start that first, and add the Nebivolol if I fail to improve.

And then there’s Digoxin (self-prescribed), which I’ve covered in detail previously – this should strengthen the action of my heart, and enable me to increase my level of activity. It’s a drug with a whole raft of deeply undesirable side effects, so that, too will bear watching carefully.

If, however, despite the potential for this all going tits up, these drugs have the desired effect, I should start to show a significant improvement quite soon.

Watch this space.

And now, we come to a comment posted on this blog about Dr. Newall. Normally, I’d leave it in the comments section, but it’s so mind-numbingly stupid it deserves a wider audience (reproduced verbatim):-

This man who you have slammed and slagged off is also a very sick man
But still makes the effort to help people. He is not a god and is also human like
The rest of us.Give him a break.
Pete.

Pete, did you actually read what I posted about this clown in any depth at all? I seriously doubt it or you wouldn’t have posted such a witless comment.

You see, it works like this – I expect a consultant to be at the top of his game. I also expect him not to put my life at risk by fucking off in a massive sulk because I refuse to submit to tests which are dangerous, in two cases (one of which, ffs, carries a 24% risk of stroke), and in another two cases, requiring me to be at the hospital at times which were quite impossible for me, and on two successive days, also impossible – because I’m too far too seriously ill.

I explained all this to Newall, at great length, as you’d know if you you’d paid attention at all. The correct response was to liaise with me and work out what we could do, and when. He didn’t do that until long after I’d submitted my complaint, by which time it was too late. I’m still waiting for an apology for being left in the wilderness for so long.

So, is he really so ill he simply can’t cope? I have no idea, but if he is he owes it to his patients to get the hell out, and take sick leave until he’s well enough to do his job properly. It really is that simple – patients should not be put at risk by a consultant who is functioning far below optimum. He doesn’t deserve a break, he deserves to be shown the door.

And by the way, I have neither slammed not slagged him off – I have reported verifiable facts – the most damning of which is that he chose to ignore me for four months.

As it’s entirely possible I might, as of now, only have another six months to live,** that severely pissed me off, and still does, especially as he could have prescribed the above medication months ago which, even if it doesn’t increase my life expectancy (which there is no reason to expect), it will almost certainly improve my quality of life.

And trust, me, I shall be sending a copy of your comment to the hospital, and asking if it’s true that a doctor who is impaired by illness is still allowed to work, to the detriment of at least one patient (and if one, then almost certainly more), and if so, why.

So very well done – you might just have cost him his job. I hope you’re happy.

And by the way, I’m an atheist, so if he had been a god that would have caused a serious existential crisis ;)

**Average life expectancy is two years from onset. I’m 18 months in, and I did not have 4 months to spare for this loser. I explained how the averages work out in this post.

Well, always assuming it doesn’t make me worse, I should see some improvement in days, rather than weeks, and be able to get out of this dump!

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